The iron lung – a polio patient's story
Type of Spiritual Experience
Miss AW made this recording in October 2008 for the Berkshire Medical Heritage Centre. She died unexpectedly shortly after making the recording.
A description of the experience
J R Soc Med. 2010 Jun 1; 103(6): 256–259.
The iron lung – a polio patient's story
I developed polio in 1949 when I was about 7 years old. I remember not feeling very well and not being able to get out of bed. It then transpired that I was paralysed down the left side. The doctor came and I was taken to the Royal Berkshire Hospital. I was in hospital over Christmas which I remember quite fondly because it was quite fun really, although I couldn't sit up. I know my parents spent Christmas Day with me. After that I cannot remember the details but I was taken to Oxford, I think it was to the Churchill. At that time it was thought a good idea to put patients out in the cold. I remember being pushed out of the veranda windows in the bed in February. I was sent home still unable to walk fully. I did not have callipers or anything like that but I was too weak down the left side. When I went back to school for half-days I had to be taken in a wheel-chair. But by the time I got to about 10, I was ‘normal’ apart from the fact that my back had started to curve: my spine was curved, but it did not stop me doing anything.
Breathing problems due to curved spine
I didn't really have any ill-effects, or at least I didn't realize it at the time. It wasn't until I was in my 20s in 1971 that I began to have breathing difficulties, but without realizing it. I just thought I was weary, until it got to the point that I couldn't walk up the street. I had been involved in the Woodley Carnival which did mean quite a bit of walking, and probably I'd been overdoing it. I finished up in the Royal Berkshire Hospital in intensive care. A doctor came from Oxford and then the next thing I knew was the bell ringing on the ambulance and I was being taken to Oxford. I don't remember anything for about a week. I had a respirator mask when I came round and it was really uncomfortable.
Into the iron lung
Then they said they were going to put me into an iron lung and I went ‘Oh!!!’ I did not know what an iron lung was, and had never seen one. But the relief of not having a respirator on my mouth and just laying flat on my back with the breathing taken over was quite relaxing. It was restful because there wasn't much for you to do in the iron lung. There was a mirror in front of you so that you could see what was going on behind. There was a frame over the top where they could put a book or a newspaper, but you had to have someone to turn the pages so not much point really; you would usually just shut your eyes and go to sleep, it was quite relaxing.
The bit that you lay on actually pulls out like a tray. You would lay on it and get pushed inside. The mechanics are underneath the machine so you're laying on the pump. And of course you get the vibration underneath. Like: … breathing, bump; breathing, bump … It was not quite like a smooth breath.
You can eat in the iron lung because your head is outside but the rest of your body is inside, although since you are flat on your back you really need to be careful when you swallow; you have to swallow in rhythm with the machine because it's pulling your diaphragm in and then pushing it out again. You just wait until it's breathing out and then you swallow. Coughing was a bit more difficult because you don't cough in rhythm with the iron lung. It was something you had to work round. But that was just sort of a down side. You cannot turn over or anything. The iron lung had port holes on the side which came in useful for physiotherapy. They had a rubber seal so you could open them on the down breath and put a hand in, to do physiotherapy or anything inside.
It is a pity that when I was in the Royal Berkshire I can't remember Dr Price and the intensive care staff, because from the minute I arrived I really did not come round until I was in Oxford. While vaguely recollecting the ambulance and the siren going, I didn't really believe I was so sick because I was not in pain; you associate being really ill with pain. The fact that you can't breathe is neither here nor there. At Oxford I do recall Dr Spalding and Dr Small. Dr Small, in his 70s, was quite a modern doctor: he was in jeans and without a white coat. To me that was like it just wasn't a doctor. The doctors were normally quite austere people but he was nice, and it was a small unit … a nice little unit with about six beds and only one iron lung. I am still friends with one of the nurses on the unit when I was in there.
They used to come and say, ‘You can come out for a little while,’ and I used to sit up perhaps to have a cup of tea, but then they would have to keep an eye on me because my fingers would go blue and in about 15 minutes I would have to go back in again. When I say in, I mean lay down again. Gradually, the 15 minutes became 20, and 20 became 30, and then you could come out of the iron lung and sit in the chair. Everything was a lot of effort, even like getting dressed or having a wash, but gradually it improved. I was probably in the iron lung for about three weeks.
The iron lung at home
I came home about September time assuming that I was OK. But a week of being without the iron lung was absolutely impossible. It was just so silly and I was back in again. I needed one at home! Fortunately we lived in a bungalow so the iron lung was put into my bedroom. It was a bit daunting at first having it in the room because the pump was rather large and it did take up quite a bit of room. But it kept my breathing going at night and kept me doing quite normal things by day. I have a brother and sister and if we had not had humour in the house I think it would have been a bit dire. My parents were probably worse off because my mother had to shut me in every night. But it was fine and we just got into a routine. When she used to put the lid down the only down side was, with your head outside and your arms inside, if you had an itch on your nose you couldn't scratch it. My mother's last job was usually to sort our any itches that I'd got. It was ‘left, right, up, down, and yes, that's right’. If you laughed and made your eyes have tears they would trickle down into your ears and that was annoying because there was nothing you could do about it. Having just shut me in, if my mother came back to say something she had forgotten, she would almost wake me up: in about 2 minutes I would be asleep.
With the iron lung at home it was really accepting that I only slept in it at nights. Once I got the idea that the iron lung was just something that happened at night then I went back to work in about November. Fortunately I could drive. I think my confidence might have been a little bit different if I hadn't been able to drive, because obviously it meant that I was able to get about more. I just went back to work and sleeping in the iron lung at night.
There were some funny sides to it. One night I decided to go to bed early. At the time the Royal Berks Hospital was servicing the pump. It had been taken away for service but the pump it had been exchanged for was set on positive instead of negative. When I got in, instead of drawing breath in the pump did the opposite! This was about 10:30 at night so my mother phoned the hospital and spoke to the technician. He said my own pump had actually been serviced but the problem was transport to bring it back because it was so heavy. He said, ‘Leave it with me and I will see what I can do.’ At about 1 o'clock the phone rang and he said he had got transport and they would be with us soon. Next thing came a fire engine and two firemen bringing the pump back. There were my Mum and Dad sitting in the living room at 2 in the morning having a cup of tea with the firemen. The neighbours wondered what on earth was going on. I was just laying in the iron lung quite happily.
A few weeks later at work in the Abbey National in Reading, I was behind the counter and this man came in and said, ‘How is your machine?’ As I said, sleeping in the iron lung at night was something that I really forgot during the day, and I had just bought a new sewing machine. So I thought, ‘Machine? How does he know I bought a sewing machine?’ ‘Don't you remember,’ he said, ‘the last time I saw you it was midnight and you were in bed.’ This was in the public area of the Abbey National! I do remember a lot of these funny things because the only way you can keep going is if you've got a sense of humour.
Newer breathing machines
I have never stopped using breathing machines. The iron lung, the ‘old one’ as I called it, I had from 1971 to 1986. The pump was getting worn out and by that time somebody had invented a smaller type which I could operate myself. My mother obviously was getting older so I had that one instead. It was not as comfortable because it was much smaller, but it was convenient to be able to do it myself.
I came to go to St Thomas' Hospital because in the early 70s after I had the iron lung and was back to work, it was apparent that my parents were the losers because they couldn't go on holiday. They had to shut me in the iron lung. I thought if there was a hospital in the country which had iron lungs I could perhaps go and stay and they could have a holiday. So I wrote to the Central Disabled Council who very kindly sent my letter on to St Thomas' Hospital, saying there was somebody knowledgeable there and they had iron lungs. I was quite amazed really. I had a phone call from the hospital saying that people there could make a jacket that might possibly be OK and would I like to go up. I went in the week. Dr Spencer, an amazing man, said ‘How have you come to be here?’ because you normally go to the hospital through another doctor or something or somebody. But luckily he knew Dr Price (Dr David Price, in charge of Reading's Intensive Care Units) who was the very kind doctor that I had seen here. Dr Spencer actually knew him, they communicated and it was fine, and I have been going to St Thomas' ever since. They have kept me really fit, as fit as I can be.
St Thomas' were all geared up with iron lungs and such things. It was certainly beneficial from my point of view. They did make me this cuirass jacket. It was a shell-like thing that fits over your body and you just have a little pump that drives it. In the early days the world was wonderful. For short periods I could be without the iron lung. Anything was possible! And I did actually take it to Jersey. I flew over to Jersey to stay with a friend. There was trouble at the airport but some kind passenger carried the pump for me. It weighed about 35 lbs. I enjoyed being with my friend, but just the normal daily things you do wore me down and I quite looked forward to getting back into the iron lung. But it was worth it at the time. And I was able to visit relations using this cuirass jacket at night.
Because I normally could only do things during the day, I went on a day trip on Concorde. There was an advert in the paper. I thought ‘I fancy that’ and sent off the money. Then I thought ‘Oh! Would my breathing be alright for that?’ So I rang Dr Spencer. Yes, he said that will be fine; you will enjoy it. And it was really really good. The only thing I was a bit worried about was when they started to talk about what we would do with the oxygen if there was anything disastrous because I wasn't at that time supposed to have oxygen. But then I thought if it got to the point we needed oxygen there was not much use in worrying because it would be too late anyway. It was really wonderful.
Then in 1991 St Thomas' got me another type of breathing machine which I still use now. It's called a ‘Nippy’ which is positive pressure. Just with a little thing over my nose and a black box about as big as a portable television, and it is portable. I mean, I have taken it away to stay with friends. Unfortunately now I need oxygen as well so it isn't so convenient but it's nice to be able to sleep in a bed. From 1991 I have been able to sleep in a bed, rather than laying flat on my back, although I do still find that I am laying on my back when I sleep. The iron lung was probably better from the point of view of taking over your breathing but the advantage of the one I've got now is sleeping in a bed.
Retirement and reflection
I retired in 1994 on ill-health grounds. At the time I was looking after my mother who was really not very well. It was quite taxing because as I slept on the ventilator at night if I heard her I had to interrupt my sleep. I was also on oxygen at the time, 16 hours a day which meant that by 3 in the afternoon I was plugged into the oxygen for the rest of the day. It obviously restricted what I did, and I couldn't carry on going into work. I didn't miss work; I probably missed the company, but I felt so much better when I stopped work because the day then took its own routine.
My mother then went into a home, and I used to go and see her every day. I don't mind my own company; I have hobbies and things that I do so it doesn't really worry me. And fortunately with my Nippy breathing machine I am independent. When I had the iron lung I used to think that I would eventually be somewhere where I would have to be looked after.
I used to wonder what would happen if I needed to go into hospital: London is a long way from Reading if you're in a dire situation. But I have been in the Royal Berks twice recently, and Castle Ward was very welcoming and very caring. I don't think people realize that if you have a medical condition, it's an advantage to keep a diary of what happens and when, because you get asked questions so many times that it all gets blurry.
Once I go down with my breathing it takes a long time for it to build back up again and there was no urgency to send me home from Castle Ward. So I am not so bothered now. I can't fault the medical profession. I know people get bad deals but I have never in my life had any bad deals. I have never asked for anything; whatever medical equipment I have been given has just been given because I need it. I am a bit cynical in some cases; people sometimes expect too much.
What is normal is doing what you can. You only have one life. OK, when I do go down I am ill. It is hard and it is difficult and sometimes you sort of think is it worth carrying on. But I must say polio people have got that stubbornness; perhaps stubborn isn't the right word but they've got it. You have to get on with it you know. But I do get tired quickly and you have to stop. That is why I have to balance out what I do. I can just stop, sit in a chair and watch TV for half an hour or read a book and then start over again; you just need to recharge. My friends know that. If I plan to go out somewhere and can't manage it I just don't go.
I don't think about the fact that I had polio, to be honest. It is only when I go through a door or have a bath and I think ‘Oh silly, you should know that's the size you are’. There are some worse things about now.
I mean at St Thomas' Lane Fox Unit on my outpatient days I always feel that I am the lucky one because there are people in wheelchairs and paraplegic persons and things like that. In the early days you met people you had known in the ward. But I always used to feel a bit unsure about getting up and walking across the room to go and get a magazine, because everybody else was in bed or in wheelchairs and it used to take me a little while to get over that. But now the hospital is used for many other problems and, therefore, you can't say that the people you're meeting are polio. They could have other disabilities. I consider I have been lucky. OK, it's not always easy to get clothes, and shoes are a bit of a problem, but I don't have to worry about callipers and things like that. The only thing is that I am short. I wouldn't mind being a bit taller.
The Royal Berkshire Hospital is now so big and quite daunting. But the Museum is in a convenient corner and very accessible. It's fascinating to see all the medical equipment, although it seems a bit strange to see something you slept in. I am fairly sure I have slept in that actual machine. Early on I once had a week in the Royal Berks sleeping in the iron lung while my parents were on a holiday. It was very good of the hospital and Dr Price was a very kind man. It is not exactly the best place to have a holiday, in intensive care, but it meant my parents could go away. I used to go home for a little while in the day and come back into the iron lung at night.
Hospitals really don't worry me because I have had quite a bit to do with them. I just find it quite interesting. If you are in intensive care although actually really all right, you see how busy the nursing staff are and their responsibility. As a 6-year-old I was in Maidenhead Hospital in isolation with scarlet fever, and then a year later came the Royal Berks and Oxford with the polio. So hospitals have no fear for me. I mean things like being afraid of needles and things, I find really stupid. I say if someone is sticking a needle in you they are doing it for your benefit; why worry about it? You really just have to get on with it.